HLH: Kai’s courageous battle with rare disorder
Kai Ashton is one little Australian who, at only two years old, was diagnosed with a rare blood disorder called hemophagocytic lymphohistiocytosis (HLH).
HLH is a life threatening immunodeficiency that primarily affects young infants and children, although it can develop at any age.
Kai’s mum, Tori, says everything in their life has changed since her son’s diagnosis in December.
“Kai started to show signs of being unwell when he was around six months old,” Tori said. “He constantly seemed to have a cold and runny nose but we were told they were just childhood viruses,” she said.
“He was very unwell on his first birthday and developed a rash. We were told, after another trip to emergency, Kai had a viral infection.
“But we knew it was something more serious and 45 minutes after being sent home from emergency Kai had a seizure and stopped breathing.
“It was terrifying. Kai needed to be incubated and doctors were thinking it may have been meningococcal.”
Blood tests finally revealed the seriousness of the situation and Kai’s parents were told their son had leukaemia and he may only live another 24 hours.
“We were in total shock but things got more complicated when doctors, after further tests, changed the diagnosis to HLH, a disease we had never even heard of,” Tori explained.
“All we knew was that our little boy was fighting for his life and we felt helpless to do anything.
“We threw a few clothes into a bag and Kai was rushed to Lady Cilento Hospital in Brisbane where he spent 10 days in ICU on breathing support and in a coma.”
Soon after, the rollercoaster ride of treatment began: chemotherapy and later a bone marrow transplant from an unrelated donor.
“It has been a really tough road and our lives have been totally turned upside down. Everything is different,” Tori said.
“I had to give up my job to be with Kai, and Kai’s dad visits most days from the Gold Coast where he works.
“We had to give up our home on the Gold Coast because we were told we’d be in Brisbane for a long time for Kai’s treatment. We’ve now been here for 265 days.”
For most of that time Tori and Kai have been staying at the Leukaemia Foundation’s ESA Village which Tori enthusiastically describes as “penthouse living”.
“I cried when we were offered a unit – I was so grateful,” Tori said.
“It’s really the most amazing place; a clean and safe environment where we have found amazing support and community.
“We’ve met wonderful people who have become close friends. We’d celebrate with those who were finishing treatment and support each other through the highs and lows.”
Now more than 160 days post-transplant, Tori still doesn’t know when she will be able to take Kai back to the Gold Coast, where they will live with Kai’s grandparents.
“Kai is doing well but it’s still too much of a risk to take him home. His temperatures can spike very suddenly and he’s had two sepsis infections. Now he is dealing with graft versus host disease (GVHD).
“Kai is on two types of steroids and three different kinds of creams that have to be rubbed into his skin.
“We’re just taking one day at a time and life is all about Kai. We are just concentrating on doing whatever it takes to make Kai well.”